marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
I'm reading a fancy journal article about the use of prosthetics by kids with upper-limb deficiencies.  Upper-limb amputations are labeled according to where the limb ends--what Charlie has is an elbow disarticulation, ED for short.  Most kids with congenital upper limb amputations have a below-elbow disarticulation, or BED, so that is the focus of the article.

So one of the big headings in the article says "DO PROSTHESES HELP FUNCTION IN BED?" 

marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (charlie-chair)
Backstory: Charlie's robo-dino-arm has a ratcheting elbow, which allows him or us--theoretically--to position the elbow at different angles, so that he can reach for things or do stuff that's not at torso midline. The prostheticist was reluctant to use a jointed elbow on such a young person, since they like kids to learn to understand the hand before they try to figure out the elbow. But the OTs at the rehab felt strongly that it would be helpful for him, and after a group discussion we & the prostheticist agreed to try it.
Cut for length.... )
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (charlie-laugh)
It's a very strange feeling to be wrestling with your tantrum-throwing, coat-avoiding toddler and have their arm come off in your hand. And then say "ok, I guess you're going to school without your arm, then."

I think the arm isn't sitting high enough on his shoulder because of recent growth. Usually it stays on pretty well...I guess a trip to the prostheticist is in our near future.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (charlie-laugh)
Charlie wears his prosthetic arm for about 3 hours a day (not all day because he's pretty good with his "armlet" and we want to retain & expand those skills).  Mostly he's fairly passive with it, which is still useful because the weight will help his back  and shoulder to develop properly, and improve his balance.  But we're trying to get him to interact with it more.  Here I've put a pacifier in the hand, and am amusing him by saying "yoink!" when he pops it out of his mouth (because that's what I say when I steal a pacifier from him, because I am Simpsons fan.)

marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
Do any of you knitty types out there use a machine?  Are socks made on a different sort of machine than sweaters and scarves?

Charlie's prosthetic arm goes over a sock, and the only 100% cotton ones are big on him and sometimes get folds in them that translate into lines on his skin.  I'd like to be able to make him some that are fitted to him, and are in a really soft cotton, instead of relying on what's available.  Since they can't have seams I can't sew them out of existing tights or socks, and since they need to be really fine gauge I can't hand knit them (leaving aside that I barely knit).  I don't have a problem buying a machine to do this--after all, he'll be needing these socks for the rest of his life, and he may as well have them in fun colors if I can do that--but I don't want to get the wrong one.  There's this "ultimate sweater machine" thing that doesn't seem to be inclined to do socks, but I haven't seen an "ultimate sock machine" so maybe I'm just not getting it?
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (CharlieChomp)
I've just spent an hour carefully covering every exposed part of the fabric strap on Charlie's new arm with waterproof first aid tape.

It's fabric, and as you can see in the pix from the previous entry, it lies across his chest when he's wearing the arm. It's riveted on to the shoulder piece so I can't remove it to launder it.   The implications of this became clear to me while I was feeding him his dinner last night.  Babies and unwashable things...just, no.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
Here's Charlie testing out his prosthetic arm for the first time, while we and the RIC team try to decide if he should have a fixed elbow or a ratcheting hinge elbow.

Normally they want the kids to learn one joint at a time, so they start with a hinged thumb and a fixed elbow and then when he's learned to work with a wired thumb (that opens and closes through movement in a shoulder harness) they move on to a wired elbow. But the occupational therapists wanted to see how he'd do with a ratcheting elbow, that locks into 3 or 4 positions and then unlocks when it's bent all the way in to the shoulder. Based on how well it seemed to work when Charlie was crawling with it, we and the RIC team opted for the ratcheting elbow. It was cool to see the discussion and decision making process between the prostheticist and the OT who came to this session--they were very respectful and took turns explaining their thinking on the subject, and although the prostheticist was leaning away from the idea of the ratcheting elbow at first, she made up the arm with one for testing and after she saw him with it she was convinced and helped to convince us. Across the board, the people who are working with Charlie on this are really talented and professional, and everyone's been very flexible and seems excited to work with him. Toddler upper-limb prosthetics are still kind of unusual, particularly with elbow involvement--it's much more common, apparently, to be born missing a hand than to be missing both the hand and the elbow. So everyone we talk to is jumping at the chance to see and/or work with Charlie, which makes everything much easier.

The dinosaur-embellished version of the arm will be ready in a couple of weeks, when we go for his final fitting. What he's wearing here is the inner layer but there will be an outer layer that covers most of the hinge.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (charlie-chair)
We spent a nice afternoon at the Rehab Institute today--first they made a plaster cast of Charlie's left arm, and then they showed us the hand options.  We chose the hand with the moveable thumb, and it seems like it will work out well--it's soft enough not to injure him, we think, but firm enough that he won't be able to take big bites out of it.  Because he will totally try to.  It's a good match in size to his other hand, except that the thumb is disproportionately large, because it's really a clamp.  That's cool, though--the hand is a bit stylized, so the thumb size only looks strange when we hold it up to his real hand.  And we're not trying to have him pass; just to have a nice-looking and useful artificial limb.

Then we had lunch in the cafeteria, where Charlie was a hit with the other diners, fortunately since he's taken to screeching. Then we met with a lady from their life-coordination department to talk about physical & occupational therapy--they are too far away for us to take Charlie there for regular PT/OT, but they will work with and train any OT/PT who has pediatric experience and wants to work with Charlie. Very cool.

We go again in two weeks to get some basic OT instruction--a lot of pediatric therapy is done by parents as part of daily life, so getting instruction from the therapists is critical--and to check the fit of the arm socket.  It'll be a clear socket that goes over his arm, that they'll attach the full limb and hand to. As he grows they can upsize the socket once or twice without needing to make a whole new arm.

The life-coordination lady had a different idea about the elbow than the prostheticist, so hopefully they will talk and figure out what the right plan is before the next appointment. While they figure that out, I'll be shopping for a local therapist for him.

I'm nervous about getting everything figured out but it's exciting to really be doing this, finally!
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (charlie-chair)
So, here is the overdue update on the plan for Charlie's prosthetic arm.

We met with the nice people at the prosthetic & orthodic department of the Rehabilitation Institute of Chicago.  My sister rehabbed at RIC after her stroke, 35 years ago, and she was able to accomplish a huge amount there, so taking Charlie there was the natural choice.  Also they run a pediatric limb deficiency daylong clinic every few months where the kids can meet each other and see an orthopedist, a prostheticist, a physical therapist, and an occupational therapist all in one go. We'll be doing that in August when the next one happens.   Oh and also, as it turns out, they're a national leader in prosthetics R&D, including bionics (More info here).  So we're excited to be able to get Charlie started with them so early in his life.

Anyway, they said Charlie's a very good candidate for a prosthetic arm, and since he's sitting unassisted and crawling he's definitely ready for one. Since he is lacking the left elbow as well as hand & forearm, the beginner prosthetic arm will have the elbow fixed in the bent position, with a molded hand that has a manually-operated opposable thumb so that he can hold things in it.  It defaults to a closed position so he won't drop stuff.

We've chosen a body-powered arm rather than a myoelectric one--myoelectric (controlled by muscle signals & sensors) is cooler, but more specialized and harder to take care of and possibly harder to use, at first anyway.  The body powered arm will give him the body skills he needs to go in a lot of different directions with prosthetics use when he's an adult. So, once he's gotten used to wearing the arm & the associated harness, and using the hand for some stuff, he'll upgrade to a "voluntary opening" hand with a wired thumb, that will open when he moves his shoulders a particular way in the harness (probably in a year or two?). Once he masters a voluntary/wired hand, he'll be upgraded to a wired elbow as well.

As he gets older, he'll get new molded socket inserts a couple times a year, and a whole new arm mold about once per year.  The hands only come in a few sizes so he won't have too many hand swaps as he grows up.  However, once he's using the adult size arm/wrist mount, he will be able to use an amazing variety of specialty replacement hands.  My favorite is the camera mount.  The basketball hand is also pretty awesome looking: 

Once you let go of the idea of making it look or function like a human hand, all kinds of stuff is possible. 

The coolest thing about this first arm? We said we're not interested in a cosmetic prosthesis for him; we want him to feel his body is whole without (most of) a left arm, and that the prosthetic arm is a really cool tool.  They agreed with this--children who are born with a limb absence don't have the sense of loss that people who lose a limb do. The hand will be caucasian flesh color (it only comes in 3 colors, and that's the closest match to Charlie's skin), but for the rest of the arm they will take any piece of stretchy fabric I care to give them, and laminate it into the arm.  OMG SO COOL!  I have some dinosaur fabric that I think will be perfect.

The plaster casting of his arm will happen on June 10, followed by a couple of fittings and then ongoing physical therapy. YAY arm! Giving a weapon to a 1-year-old baby, possibly not awesome from the POV of the people around him, but overall this is going to be AWESOME.

marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (CharlieChomp)
We did make it to the rehab institute meeting--Charlie had an ear infection, and is back on antibiotics, so we said "heck with it" and went anyway, since he was miserable but not contagious. They will start making his new arm as soon as they get the go-ahead from insurance, which they said usually takes a week or two.

I'll save my detailed write-up until after Wiscon--I'm only going for a day, but since half my f-list is already there and too busy to read LJ anyway, I figure I shouldn't post about REALLY COOL PROSTHETIC STUFF until after the weekend.

(also I don't have time to do a proper write-up yet; sorry to be a tease)
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)

Images here and here, good article here.

This article over here has a nice video accompanying it, but it also contains the ridiculous statement "Some people say that Ruthie is challeng[ing] the idea of perfection and opens people’s eyes to the true nature of beauty, which doesn’t have anything to do with whether or not you can fit into size 0 jeans" Ridiculous because she looks exactly like a regular fashion model, except for her arm--particularly if you watch the video, you can see that she's skinny.  It's very cool that she's succeeding with a visible flaw in an industry built on appearances, and I do think that's a positive sign, but it's not like fashion has become about celebrating the totality of humanity all of a sudden. 

Robot Arm

Jul. 27th, 2008 12:34 pm
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
Our 7-year old neighbor girl, who is already crazy about Charlie, announced when she met him that "he can get a robot arm, and that'll be better.  They have one for the WII and it works really good."

In fact, he really can have a robot arm, although maybe not for the WII just yet.  There are a lot of different approaches to limb deficiency nowadays, but the orthopedist said he's a good candiate for a lot of options, ranging from no prosthesis at all to a myoelectric arm, that moves based on the wearer's muscle motion.  Cool!  We're starting him with occupational therapy ASAP so that he develops his core muscles correctly--basically, just giving him as much stimulation from the left as possible so he learns to turn that way and move the limb.  I'm going to get a bell I can tie to his sleeve, now that he's starting to turn his head toward sounds.

In a few months, once he starts sitting up, we'll take him to the Rehab Institute of Chicago to talk about a starter prosthesis.  We're not going to have him in one all the time, and we're not in favor of trying to look "normal," but we want make sure he learns the ability to use prosthetics as he grows up so that his options stay open.   We're going to go up and take a tour of their pediatric limb deficiency clinic soonish so we get to know all the people and services.  Yay RIC!  That's where my sister rehabbed 30 years ago after her stroke, and we're excited to be able to give Charlie the opportunity to work with them.

April 2013

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